The multiple sclerosis patient’s journey model in Poland – future tasks

Improvement of the diagnostic and therapeutic processes and optimal use of resources in the context of health care system specificity accelerate the diagnosis and treatment onset, as well as improve the quality of life of patients with multiple sclerosis. International experience and data from clinical practice in Poland gave rise to a number of guidelines for the needed measures, from increasing the awareness about multiple sclerosis among the society and doctors in general, through expanding outpatient medical care, to proposing a model network of healthcare centres dedicated to patients with multiple sclerosis. It was pointed out that there is a need for a network of clinics specialised in the diagnosis and treatment of multiple sclerosis (MS clinics) and centres for comprehensive diagnosis and treatment, with a higher reference level and all the competences of an MS clinic, and, at the same time, providing both consultations in difficult clinical cases and access to the most advanced diagnostic and therapeutic methods. Attention was also drawn to the need to use modern e-health tools, which should improve the diagnostic and therapeutic process, as well as tighten the coordination of care by enabling an effective exchange of information between the patient and the entire interdisciplinary team involved in the therapeutic process.

Barriers to Accessing Health Care for People with Chronic Conditions: A Qualitative Study

Background: There is a growing interest in redesigning healthcare systems to increase access to and coordination across care settings for people with chronic conditions. We aim to promote patient-centredness by gaining a better understanding of the barriers faced by (1) children with chronic bronchial asthma, (2) adults with non-specific chronic back pain, and (3) older people with pre-existing mental illness/es while addressing the problem of fragmentation in Austria’s healthcare system.Methods: Using a qualitative design, we conducted semi-structured interviews face-to-face and by telephone with health service providers, researchers, experts by experience (e.g., patient advocates, family members/carers), and employees in public health administration between July and October 2019. The analysis and interpretation of data were guided by Levesque’s model of access, a conceptual framework used to evaluate access broadly according to five dimensions of accessibility to care: approachability, acceptability, availability and accommodation, affordability, and appropriateness.Results: The findings from the 25 expert interviews were organised within Levesque’s conceptual framework in four dimensions of barriers. They highlight the lack of coordination and defined patient pathways, particularly at the onset of the condition, when seeking a diagnosis, but also later on. Barriers related to issues such as geography (e.g., longer distances and travel times as well as fewer healthcare services in remote rural regions), coordination of care (e.g., structural barriers and inconsistent care pathways), socioeconomic status (e.g., the ability to pay for healthcare services but also basic health literacy), and comorbidity (e.g., consideration of the patients’ state of mental health and holistic therapy approaches).Conclusions: Barriers to healthcare access are of particular concern for patients with chronic conditions, resulting in an urgent need to improve health services according to patients’ specific needs. For health services to be properly accessible, timely and integrated care independent of social and economic resources, continuity of care, and significant improvements in patient-centred communication and coordination of care are paramount. This study has important implications for policy and practice as it highlights provider, expert, and researcher perspectives on access to the healthcare system in Austria and offers a broader look at the changes required by stakeholders in the future.

Perioperative consultative hematology: can you clear my patient for a procedure?

Periprocedural management of antithrombotics is a common but challenging clinical scenario that renders patients vulnerable to potential adverse events such as bleeding and thrombosis. Over the past decade, periprocedural antithrombotic approaches have changed considerably with the advent of direct oral anticoagulants (DOACs), as well as a paradigm shift away from bridging in many warfarin patients. Successfully navigating this high-risk period relies on a number of individualized patient assessments conducted within a framework of standardized, systematic approaches. It also requires a thorough understanding of antithrombotic pharmacokinetics, multidisciplinary coordination of care, and comprehensive patient education and empowerment. In this article, we provide clinicians with a practical, stepwise approach to periprocedural management of antithrombotic agents through case-based examples of relevant clinical scenarios.

Bridging the Gap between Ophthalmology and Emergency Medicine in Community-Based Emergency Departments (EDs): A Neuro-Ophthalmology Guide for ED Practitioners

Coordination of care for patients with neuro-ophthalmic disorders can be very challenging in the community emergency department (ED) setting. Unlike university- or tertiary hospital-based EDs, the general ophthalmologist is often not as familiar with neuro-ophthalmology and the examination of neuro-ophthalmology patients in the acute ED setting. Embracing image capturing of the fundus, using a non-mydriatic camera, may be a game-changer for communication between ED physicians, ophthalmologists, and tele-neurologists. Patient care decisions can now be made with photographic documentation that is then conveyed through HIPAA-compliant messaging with accurate and useful information with both ease and convenience. Likewise, external photos of the anterior segment and motility are also helpful. Finally, establishing clinical and imaging guidelines for common neuro-ophthalmic disorders can help facilitate complete and appropriate evaluation and treatment.

Timely Communication Through Telehealth: Added Value for a Caregiver During COVID-19

Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic.Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts.Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis.Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period.Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease.

Continuity and coordination of care in highly selected chronic cancer patients treated with multiple repeat radiation therapy

Introduction and background As cancer is developing into a chronic disease due to longer survival, continuity and coordination of oncological care are becoming more important for patients. As radiation oncology departments are an integral part of cancer care and as repeat irradiation becomes more commonplace, the relevance of continuity and coordination of care in operating procedures is increasing. This study aims to perform a single-institution analysis of cancer patients in which continuity and coordination of care matters most, namely the highly selected group with multiple repeat course radiotherapy throughout their chronic disease. Materials and methods All patients who received at least five courses of radiotherapy at the Department of Radiation Oncology at the University Hospital Zurich from 2011 to 2019 and who were alive at the time of the initiation of this project were included into this study. Patient and treatment characteristics were extracted from the hospital information and treatment planning systems. All patients completed two questionnaires on continuity of care, one of which was designed in-house and one of which was taken from the literature. Results Of the 33 patients identified at baseline, 20 (60.6%) participated in this study. A median of 6 years (range 3–13) elapsed between the first and the last visit at the cancer center. The median number of involved primary oncologists at the radiation oncology department was two (range 1–5). Fifty-seven percent of radiation therapy courses were preceded by a tumor board discussion. Both questionnaires showed high levels of experienced continuity of care. No statistically significant differences in experienced continuity of care between groups with more or less than two primary oncologists was found. Discussion and conclusion Patients treated with multiple repeat radiation therapy at our department over the past decade experienced high levels of continuity of care, yet further efforts should be undertaken to coordinate care among oncological disciplines in large cancer centers through better and increased use of interdisciplinary tumor boards.

Overview of Puskesmas Leadership Understanding Coordination of Care Functions in Decline Non-Communicable Diseases (NCD) in the Work Area

The Description of the head of local government clinic leadership understanding through the coordination of healths ervice Function In Decreasing Non Communicable Diseases (NCD) In the Working Area. Non-communicable diseases (NCD) such as heart and blood vessel disease, Diabetes Mellitus (DM), chronic lung disease, cancer (especially cervical and breast cancer) are among the health concerns of national and global concerns. To reduce the number of NCD required first-level health facilities in this case is the Puskesmas that can be the implementation of gatekeeper concept with the strengthening of four primary function of primary services, one of which is the coordination function. Therefore, it is necessary for leaders of puskesmas who have a good understanding of the coordination of care function to decrease NCD. This study aims to determine the description of the leadership of the puskesmas through the coordination of health in the decrease of Non Communicable Diseases (NCD) in its working area. This study is a descriptive study with cross sectional design, with a total sample of 37 respondents. The data were collected using questionnaires that have been tested for validity and reliability. Measurement results can be grouped into 3 categories of knowledge; ie good (if score 76% -100%), enough (56-75%), and less (<= 55%). From the results of the study, all respondents (37 respondents) had a total score above 76%, it can be concluded that the leaders of Puskesmas in Palembang City have a good understanding about the function of health coordination service in decreasing NCD in their working area.

Patients Unmet Needs in Chronic Rhinosinusitis With Nasal Polyps Care: A Patient Advisory Board Statement of EUFOREA

Background: European patients with chronic rhinosinusitis with nasal polyps (CRSwNP) have had only limited occasions to unite to have their voices heard, hence missing the opportunity to contribute to the improvement of CRSwNP care.Aims: To identify unmet needs in CRSwNP from the perspective of CRSwNP patients from the Patient Advisory Board (PAB) of the European Forum for Research and Education in Allergy and Airways diseases (EUFOREA).Methodology: Semi-structured interviews were conducted individually with 15 European patients with CRSwNP and with a disease history of more than 2 years. Patients shared their burden of the disease and frustrations related to CRSwNP care, experiences with key pillars of current treatment options, shortcomings of the current care pathways and recommendations for improvement of care. A panel of 30 members of the Patient Advisory Board reviewed the interview report and provided further input during 2 virtual meetings.Results: CRSwNP patients indicated the need for greater awareness from society and physicians of the disease burden with impact on social function and well-being. Along with a loss of ability to smell and the continuous presence of secretions in the nose, most patients reported poor sleep quality and psychological impact as the most bothersome symptoms. Patients' frustrations relate primarily to the underestimation of the disease burden, the lack of coordination of care and the limited treatment options available to them. Treatment options with oral corticosteroids and/or sinus surgery both have positive and negative aspects, including the lack of long-lasting efficacy. Better coordination of care, more patient-centered care, greater public awareness, increases in research on the disease mechanisms and better therapeutic options would be warmly welcomed by CRSwNP patients.Conclusions: This statement of the EUFOREA Patient Advisory Board on CRSwNP provides novel insights on the underestimation of the burden of CRSwNP and shortcomings of current care. Multiple recommendations made by the patients can underpin action plans for implementation of better care for CRSwNP among all physicians treating patients with this disabling disease.